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Pushing Forward Against the Arm of Paternalism

This past Monday, I was heading to Baltimore to present at the biennial Leaders Assembly for one of my favorite clients, the Foundation for Jewish Camp.
Heading downstairs in my apartment building, I entered the elevator where another woman was standing near the button panel. Since I didn’t want to awkwardly bump her while reaching for the button panel, I asked her to press the lobby button for me. She did.

I cannot see elevator lights, so instead I listen to the beeps to determine which floor I am on. I entered on the fourth floor, so after the elevator descended and I heard it beep three times, I knew I was on the first (lobby) floor. Having lived in my current building for ten months, I had done this elevator ride hundreds of times, and was confident in my travels.

The door opened, but my elevator companion said “no, this isn’t the lobby.”
“Yes it is,” I countered, and walked toward the door.
“No, not the lobby,” she said again. She then tried to block my exit with her arm. Instinct took over, and I pushed forward as hard as I could. Luckily the interfering arm gave way. I stepped out of the elevator into the lobby. My companion continued down to the garage.

I am unsure why my elevator companion was so confident that I was exiting in the wrong place; perhaps there was a language barrier, perhaps the visual indicators from the elevator malfunctioned, or perhaps she was just distracted. In any case, she and I had different perceptions of the same reality. As it turned out, my perception was correct and hers was not. Rather than simply accepting this discrepancy, though, she felt it necessary to try to correct my “error” in a direct physical way. I couldn’t help but wonder if the same thing would have happened if I did not have a visible disability.

I traveled to Baltimore and got ready for my workshop, still feeling unsettled. Of course, I was rattled by the physical confrontation and the fear of being trapped in the elevator. I felt frustrated to have had my judgment and competence questioned. And, I was alarmed by my own internalized sense of doubt. When the elevator door first opened, part of me wondered if I really wasn’t in the lobby after all, and when I pushed out of the elevator, I half expected to be on the wrong floor. There was a part of me that wanted to acquiesce to her simply because she could see and I could not. Even in my own apartment building, where navigating is automatic and mindless, I doubted my own judgment.

Those of us who were born disabled find ourselves immersed in a world of people who sense, think, feel, speak, or move differently than we do. From the earliest age, we are taught to obey figures of authority who interact with the world in this different way. All too often, we are subjected to well-meaning interventions meant to convert our ways of sensing, thinking, feeling, speaking or moving into a more typical manner. Explicitly and implicitly, we learn that our ways of interacting aren’t as good or as right as the ways the rest of the world interacts. And, when a discrepancy of perception or judgment occurs, we may tend to follow that of the nondisabled person over our own. If we push forward, asserting the soundness of our judgment and our desire to move ahead, sometimes the well-meaning, but oppressive, arm comes up to stop us in our tracks. If this happens often enough, the natural response is just to stay put and stop pushing.

In Baltimore, I spoke with a small group of camp leaders about strategies to build an inclusive camper culture. I began by introducing my own story of being excluded from a Jewish summer camp. Then, we discussed tough situations involving reactions to disabilities. The workshop participants discussed how they allowed campers with disabilities to tell their own stories and reframe their peers’ questions about differences in positive terms. We talked about universal design and strategic staffing arrangements to support all campers without drawing extra attention to a camper with a disability. We talked about the balance between inclusion and disability community, and how we can foster disability pride in young people while still giving them the same opportunities as their peers without disabilities.

I rode home and grabbed the elevator up to my apartment (alone this time). By then, I was feeling a bit more optimistic about the future of my brothers and sisters with disabilities. At least some members of our society recognize the positive value of differences. These allies enable others to tell their own stories and trust their own perceptions without imposing nondisabled norms and expectations on them. Perhaps we will raise a new generation of disabled people who rarely, if ever, doubt their own convictions in the face of nondisabled challenge. Inevitably, young people with disabilities will encounter the interfering arms of others attempting to redirect their dreams. But I am confident that we can give them the strength to gently, but firmly, push their way past.

ableism

From Autistic Hoya: Examining Ableism in Language

Ableism is not a list of bad words. Language is *one* tool of an oppressive system. Being aware of language — for those of us who have the privilege of being able to change our language — can help us understand how pervasive ableism is. Ableism is systematic, institutional devaluing of bodies and minds deemed deviant, abnormal, defective, subhuman, less than. Ableism is *violence.*

Ableism is entrenched in our history and culture. One of the most insidious expressions of ableism comes in our everyday use of language. In this post from the blog Autistic Hoya, Lydia Brown identifies common words that have historic or contemporary links to ableism. Lydia Brown does not advocate a blanket ban on all of these terms; rather, Lydia suggests that we must be mindful of the connotations of the words we choose, particularly when communicating strong feelings. The post concludes with a list of alternative, non-ableist terms that can be substituted.
Autistic Hoya: Ableism/Language

ableism, disability etiquette, Disabled voices

Is This OK with You? [Reblog]

This week’s repost is a poetic post from BlindBeader’s “Life Unscripted” blog. BlindBeader details the various reactions others have to our disabilities, repeating the refrain, “Is this OK with you?” From being disregarded as a job applicant, to being talked over at a restaurant, to being told how to think about one’s own disability, we are often expected to accept treatment that most other people would never be OK with. This post gives us the energy to say, “it’s not OK with us,” and that is the first step to taking action.
Is This OK With You?

ableism, Media portrayals

Disability in the Media: Are We Just Being Too Sensitive?

On September 25, 2005, an article appeared in the New York Times Sunday magazine featuring an anonymous blind man. The author, Gabrielle Hamilton, interviewed him for a position as a line cook in her restaurant. The man never disclosed his disability or requested any accommodations, and as a result, he failed the interview miserably. The article is rife with disability slurs and stereotypes, beginning with the description of the man’s eyes as “rolling around in his head like fish in the aquarium of a cheap motel lobby” and continuing to describe his spilling salt on the counter, fries on the floor, and almost burning his hair over the grill as he tried to see the meat. Ms. Hamilton focused on her first-person account of her reactions to the applicant, admitting that she was at first awed by him, then frustrated, and finally she failed to tell him the real reason he did not get the job.

I was a 20-year-old college student when that article made the rounds. My eyes have always moved uncontrollably, and the article felt personal. So, I put my homework on hold, and wrote a detailed complaint letter to the editor. Several other blind folks did the same. But, far from pulling the offensive article or even apologizing, the editor sent a form reply to all of us, stating, in brief, that “we do not feel that Hamilton’s story was insensitive to the blind…..We believe the story was a poignant and sensitive slice-of-life about a difficult subject. And we hope you will reconsider your thoughts about our judgment.” Instead of taking responsibility for any unintentional offense caused, the editor put the responsibility on us to just not be so sensitive. And, the article is still online Check out some responses from blind people

On October 3, 2008, a film called “Blindness” was released. An adaptation of the award-winning novel by the same name, Blindness features a society plagued by a sudden epidemic of “white sickness.” Everyone goes blind, and can only see a fuzzy white light. The people are quarantined, and the social order collapses. Among other things, the book and film feature blinded individuals literally defecating in the streets or their beds because they cannot get themselves to the toilet; an armed gang of blinded men terrorizes the others, stealing food and valuables and abusing the women; and the social order is saved by one woman who mysteriously avoids becoming blind.
Several of us organized informational protests at movie theaters on the film’s opening night. In discussions, however, it became clear that some people thought we were, again, being overly sensitive. I was told, by both blind and sighted people, that I shouldn’t be upset by this film because it wasn’t about “real” blindness. Instead, the term “blindness” was just being used as a metaphor for the depravity that can rise up in society when we fail to cooperate. The awful living conditions in the film were supposed to be analogous to life after a natural disaster. I was told that the blinded characters in the film were different from the “real” blind people who inhabit this earth. Intelligent viewers, I was told, would be able to make the distinction. I explained that I could see little difference between people who go blind suddenly from “white sickness” and my friends who went blind suddenly from illness or accident. I explained that one of the characters, who actually became the gang leader for a time, was congenitally blind and used braille. And, I explained that even if people can consciously distinguish between movie characters and people they meet on the street or around the conference table, we all have unconscious, implicit prejudices and associations that can be activated by these kinds of depictions. Fortunately, the film did not perform well and only stayed in theaters for a few weeks, although this probably had little to do with the blindness community.

Finally, just this week, I read this article about an ad for a powdered “green” juice product called Zuma Juice. One of the characters in this ad was a woman sitting in a power wheelchair, shoveling cheese puffs into her mouth and washing them down with soda. She was presented as a stark contrast to a fit woman making the juice. As David Perry states in his critique, the ad played on two of the worst stereotypes toward wheelchair users: that their disability is due to unhealthy choices, and that they’re just using the chair out of laziness rather than a real mobility need.

At first, dialogue with Zuma went similarly to the dialogue with NYT and the Blindness filmmakers. Zuma reps apologized, but said that “There are a lot of people out there who use power chairs who don’t need them,” a comment that ignores those individuals who need power chairs but can’t afford them. Zuma reiterated that their company was “all about inclusivity and positivity,” implying, again, that as long as they didn’t mean to be offensive, there was no problem.

Eventually, however, Zuma listened to the disability community, and removed the wheelchair user from the ad. “We did damage, and we realize it now” they told Mr. Perry. I commend Zuma for their honesty and humility, but at the same time, I wish they had come to this realization before 300,000 people viewed the ad.

Media portrayals of disabled people matter. They matter just as much as portrayals of ethnic minorities, women, LGBTQ people, homeless people, and any other group that has been historically devalued. But as long as journalists, filmmakers, novelists, advertisers, and others deny the importance of how they portray disabled characters, stereotypes and stigmas will continue to be reinforced.

It’s said that an ounce of prevention is worth a pound of cure. I know it is difficult for companies to do damage control after something is released. But disabled people are around, and we’re available to evaluate media that involves us before it gets released to the public. Perhaps by contacting us first, the people who want to include us in print media, in film, or in commercials can start off on a good foot.

I recognize that often people who portray us negatively don’t do so out of malice. They usually have some other goal that has the potential to conflict with disability justice. But by talking with us, it is possible to find a way to reconcile your non-disability-related goals with positive disability depictions.

For example, Gabrielle Hamilton wrote about the challenges of interviewing a visibly disabled job applicant who chose not to disclose his disability. That is a genuinely challenging situation, one that deserves consideration. But, if she had talked with us, she could have found a way to present her dilemma without relying on demeaning stereotypes and clichés. She could have even had an ADA expert write an addendum to the article, discussing the legal ramifications of her situation and what she was or was not allowed to ask him about his disability. She could have done well, at least, to cut that sentence about the guy’s eyes rolling around like aquarium fish. Similarly, there are ways to create metaphor and allegory without exploiting real conditions, and to sell products or raise money for charities without playing on people’s stereotypes and fears.

Are you a journalist or blogger writing about disability? The National Center on Disability and Journalismhas some great resources, including a list of national disability organizationsContact the presidents of these organizations to gain perspective on how the piece you are writing might impact their community; and keep in mind that, as in the Blindness film, there can sometimes be debate even within a community. Even if not everyone agrees, though, I’ll bet they’ll be glad you asked.

ableism, Family, Solidarity2

Oh, Gnats!

In May 2010, a young couple welcomed the birth of their first baby girl. As Mom prepared to nurse baby for the first time, she struggled to position baby correctly on her breast. For a moment, her breast blocked baby’s nose, and baby began to turn blue. Mom called her nurse, who helped reposition baby, assuring Mom that it’s common for new mothers to need a little help getting the hang of nursing, and all was well.

But a few hours later, a social worker was contacted. Concerns were raised about the parents’ abilities to care for a newborn. Two days after her birth, baby was placed in a foster home, where she would stay until she was nearly two months old.

Why would a brief nursing mishap lead to the removal of a newborn from her parents? Especially when Mom was responsible enough to ask for help?

Because, you guessed it-Mom and Dad are both blind.

When the social worker first arrived, she bombarded the new parents with questions about how they would feed, change, transport and care for an infant. Mom and Dad, despite sure exhaustion from the birth process, answered the questions capably. Even so, the social worker ultimately stated that “I just can’t, in good conscience, send this baby home with two people who are blind.” For the next 57 days, Mom and Dad could only visit their newborn baby three times per week. Baby missed out on her mother’s milk, while her parents missed the feel of her first snuggles and the sound of her first giggles.
Click here to read more about this case

This story of Erica Johnson, Blake Sinnett, and their daughter Mikaela rocked the blind advocate community, especially the young adults like me. But thousands of disabled parents have their own stories, variations on this similar theme. Their disability becomes tied up in questions about their fitness as parents, and once the child welfare system becomes involved, proving their fitness can be an uphill battle. And the threat doesn’t end once parents take their newborns home from the hospital; well-meaning neighbors, strangers on a bus, even relatives may call the child welfare agency in at any time. The Americans with Disabilities Act (ADA) protects disabled parents’ rights, but many states still have outdated child welfare laws allowing social services to consider a parent’s disability as an automatic strike against their parental fitness. The consequences of this presumption can be tragic for families. Baby Mikaela got to come home to her parents, but too many cases end in the termination of the disabled parent’s rights.
According to a National Council on Disability report, disabled parents may be more than three times as likely as nondisabled parents to have their parental rights terminated. The removal of children from disabled parents is perhaps one of the most serious instances in which good intentions, combined with a fundamental misunderstanding of disability, lead to grave harm for both the parents and their children.

Below is a personal essay from Jo Pinto, a novelist and mom to a 9-year-old girl. Jo is blind. From her writings on parenting, it is clear that she is a good, responsible, involved mom. Yet she recounts the continual fear of child welfare’s involvement in her family life, and how an innocent misfortune like some gnats in her daughter’s lunchbox can trigger a cascade of worry. Yet she persists and prevails with confidence. This is what she says:

Oh, Gnats!

My nine-year-old daughter Sarah burst through the front door and shoved her soft-sided lunchbox into my lap full force, right on top of the braille book I was proofreading. “Mom! Bugs flew out at me! I opened the zipper, and a cloud of bugs just poofed out at me!”

“What? Wait, what?” I set aside my work, took the lunchbox, and like any respectable mom, shifted immediately into sleuth mode. “Start from the beginning. Bugs flew out of your lunchbox? What did the bugs look like? What did you do?”

“Tiny black bugs. They were disgusting. I screamed—eeeww! Then my friend Lily saw them and she screamed, and this boy Darien saw them and he screamed, too. The lunch lady ran over, and she thought the bugs were gross. so she got the custodian to clean out my lunchbox. And I didn’t want to eat the food, so I got another lunch.”

I kept calm on the outside, but I felt a familiar terror gripping my heart, mercilessly, like a cruel, crushing hand. The hand let go of my heart as my thoughts whirled; then it slid upward to my throat, digging viciously into my windpipe, cutting off my breath.

Who else had seen those bugs fly out of my daughter’s lunchbox? Surely everybody had noticed, especially since Sarah had been such a drama queen about it. What if the custodian or the cafeteria supervisor decided Sarah’s blind mom couldn’t keep a clean kitchen, since she sent her little girl to school with bugs in her lunchbox? I was almost sure the bugs were harmless. They were probably just common house gnats, but still. EEEWW!

“I’m sorry about the bugs.” I forced myself to speak calmly, although I was fighting like mad to keep from hyperventilating. “That must have been embarrassing. But gnats are harmless. They’re just annoying little critters that eat fruit. They probably stowed away on the pineapple or the bananas we bought last night. I’ll make sure your lunchbox is nice and clean for tomorrow.”

I washed the lunchbox out with antibacterial soap, and when Sarah’s dad came home from work that night, he flushed the kitchen and bathroom drains out with vinegar and hot water, just in case.

“Drink up, boys!” he said cheerfully. “That should take care of the gnats for a while.”

But it would take a lot more than vinegar and water to wash my fears away. Blind parents are three to four times more likely to be referred to Child Protective Services (CPS) than their sighted peers are. I couldn’t keep from wondering if the gnats in Sarah’s lunchbox would be the next issue that prompted some well-meaning school official to pick up the phone.

The first time I had to face down CPS, someone had called me in because I had a “big black mean-looking dog”—and you never know, a dog might harm a crawling baby if her mom couldn’t keep watch on the situation every moment. Ballad, my second guide dog, would never have hurt a fly. Sarah used to sit on her head now and then, and Ballad would hardly wake up from her nap to shrug off the annoyance. The case was closed, unfounded.

The second time a social worker and a police officer appeared on my porch, I had brought home some groceries on a sweltering summer day. I was trying to unlock my front door, juggling a guide dog, a cranky toddler, a heavy backpack, a sack of canned goods, and a gallon of milk. Something had to go. What went was the gallon of milk, which was the reason I had gone to the store in the first place. Splat! All over the front porch. I cursed. My daughter cried. The dog began lapping up the milk, which ran like a river over my feet and down the porch steps. I dropped the bag of canned goods in the puddle. It was my turn to cry as I rushed into the house. An hour later, I had a police officer and a social worker on my still milky doorstep, informing me that an anonymous caller said “the blind lady wasn’t coping well.” I told them I would have coped a whole lot better if the anonymous caller had come to my aid, mop and bucket in hand, maybe with a listening ear besides, instead of calling the social workers and the police. The case was closed, unfounded.

Next, a nosy neighbor had threatened to call CPS because I regularly took my little girl to the swimming pool by myself at the condo complex where we lived.

“Some of the other moms and I, we’ve been talking,” she told me. “We think it’s dangerous for you and Sarah to be at the pool alone.”

Instead of asking her why she and the other moms didn’t come hang out with us at the pool—which, in hindsight, might have been a really good question—I assured her that my daughter had worn flotation devices since infancy, that I’d been a competitive swimmer in high school and was competent in the water, that I stayed right next to Sarah as she swam and kept in verbal and physical touch with her at all times, and that I wasn’t about to let the fears of the neighborhood moms limit my little girl by keeping her home from the pool I helped pay for with my HOA dues. I believed that learning to swim, at least enough to save herself from drowning, was not only a great opportunity for my daughter but also an important precaution I needed to take for her safety. So if the neighborhood moms felt the need to call CPS, they could do what they had to do and I’d take on that battle when it landed in my lap. I never heard another word about it.

Nevertheless, as a blind mom, the nagging worry about CPS lurks constantly in the back of my mind. When my daughter gets a new teacher at school or joins a different Sunday school class at church, I feel happy for the opportunity. Then she inevitably does something goofy—and perfectly normal—like wear a raggedy old jacket that’s two sizes too small. You know, the kind of jacket you thought you threw in the box of cleaning rags under the kitchen sink. And the worry in the back of my mind flares up into a hot flame of fear. What if the new teacher thinks I can’t dress my daughter properly? What if she decides to make the dreaded phone call? Fortunately, the teacher laughs off the incident when I explain that my kid has a very unconventional fashion sense and that she’s a hoarder in training. and the flame of fear dies down to a nagging worry once again—till next time.

Thankfully, the gnats disappeared easily from my kitchen, and nobody from the school made a big deal about them. But raising kids in a fishbowl is a sad reality for disabled moms in our society. We have set incredibly narrow standards of what motherhood should look like. When people see moms who deviate from those standards, suspicion and judgment tend to be their first reactions. Most people soften their views with familiarity and education, but blind moms and those with other disabilities unfortunately get used to parenting under pressure as their children grow up and navigate the normal scrapes and scuffles of life. The good news is, I’ve found that most of the issues my daughter and I face are no different than the ones sighted parents and their children deal with every day. I know I’m a good mom, so in spite of the nagging worry about CPS that lingers in my mind and flares up into full-blown fear now and then, I have the confidence as a parent to face down any obstacles that come my way. Be they gnats or nosy neighbors or unknown trials of the future, I’ll prevail against them one by one.
[Reprinted from Blind Motherhood]
Click here to read about blind parents raising their children